Last Friday, I was diagnosed with Secondary Progressive MS from my new Neurologist. It’s been making me feel scared and worried sometimes of what’s to come.
I had a severe relapse in Feb this year and I’ve been recovering at home since. For over 5 weeks now, I’ve been doing Physical therapy and Occupational Therapy at home because I had trouble walking at the hospital. I’ve become stronger since then and I’m happy about that. But the biggest challenge is my legs, which run out of strength pretty fast. I’ve noticed a change in my leg strength for over a year now, but it’s become worse after this relapse. The last few years I haven’t recovered from relapses only partially or it lingers on and on, which all this is another clue to progression as my Neuro said. I’ve been learning from OT to pace myself more with each activity I do (mental or physical) then rest for a while. This has been quite the adjustment in my lifestyle, but it has been helping to reduce some of my intense fatigue I suffer from.
I’m getting frustrated with my legs and the “new” limitations I have to deal with. I feel like I’m re-playing my initial diagnosis of RRMS 8 years ago, but this time I’m just better equipped with resources and more help. That’s good but it still feels like a mourning to me dealing with this new progression stage, loss of more leg strength and limited ability to do things I want to do.
Would anyone be able to share their experience with Secondary Progressive? I would love to hear how you’re doing and how you’re handling this.
Thank you so much for listening-Nikki
Written by
nicoly3467
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Hi Nikki, I am sorry about your dx, but I know you have a strong faith. Enjoy today, as it’s a gift, tomorrow will take care of itself. I have PPMS so I cannot give you any insights into SPMS, but stay as strong as you can, mentally, and it will help you cope. Big hug and blessings Jimeka 🤗
Hi Nikki, I am also Secondary Progressive and I would like to encourage you to stay hopeful and don't let fear get to you. I am on Ocrevus and doing alright. Basically some days/weeks are tougher than others, but MS is just like that...unpredictable. It was unpredictable when I was labeled Relapsing/Remitting those years ago, too. So I have tried to not let the label change get to me.
I keep a positive attitude in my life, as much as possible (although some days I cry, too) between work and rest, and I exercise as much as I can and try to take care of myself. But most of all I trust God to get me through. He always has; always will.
Hi Nikki, I am so sorry that you are having to deal with this. I was diagnosed with SPMS about 15 years ago, after 25 years or so of RRMS. I was struck by your use of the word mourning. I understand that. This MS is different from what we knew. I wish I had accepted, and mourned the loss, when I first was dx'd, but I didn't, and pushed my body to limits it can't reach, nor recover from now. A positive attitude will take us farther than we can imagine. I can still do many of the things I enjoy, I just do them differently now. I can still drive, but a trip to the grocery store is a big trip for me...no more 600+ miles a day! I can still walk, but I use a cane or my Rollator, I don't walk 10 miles on the trail every day. I can still work in my flower gardens, but I ask for help with mulching, big digging, heavy shoveling. I can still live in my own home, and take care of it, except for the mopping! That I get help with! Yes, I fall, sometimes a lot, but I always get back up. I live alone, with my cats, and 3 little dogs, and I volunteer at our local Humane Society. Life is good, and God is with me, every shaky step of the way.
Dear Nikki, I was diagnosed with Secondary Progressive MS many years ago and what I have found is that my disability specially my legs and in general my left side has slowly over the years gotten worse. There are a few things that I discovered that help with the progression.
1. MUST CHANGE DIET this is tough but cannot articulate how important this is, we are what we eat, and it affects everything with MS. I can recommend three cookbooks; Runners World Cookbook, Mediterranean Diet Cookbook there a bunch to choose from and The American Heart Association Cookbook when you seriously change your diet good things start to happen, but it is exceedingly difficult to get into the routine, but I believe it does help slow the progression of MS dramatically.
2. GET AS MUCH SUN AS POSSIBLE, expose as much skin as you are comfortable with weather permitting, all is best, but some is good. The more exposure the more vitamin D your skin naturally produces, up until the last few years MS was known as the white man’s disease the highest concentration of people with MS per 100,000 is Scotland and Finland the lowest being counties like Indonesia and Brazil therefore a lack of vitamin D may contribute to the disease. Exposure to the sun in moderation is good, I also take a vitamin D tablet daily, no definitive clinical proof but I think it may help cannot hurt.
3. AVOID EXTREMES IN TEMPATURE, too cold causes problems and too much heat and humidity really cause problems just try to stay in 70 and safe and outside when possible but again be careful not to overheat or get chilled.
4. AVOID STRESS IF POSSIBLE, like diet and lack of vitamin D no definitive clinical proof, that I know of, but I believe we experience a lot of stress in daily living which I believe is a contributor. Try not to worry and be happy.
Just remember that you must get up every day and continue to swing the bat do not go gently into night, fight against your fate and fight against this injustice to your life, we certainly did not ask for Multiple Sclerosis, but we do have to live with it.
Thank you for sharing this info. Yes, I’ve been on an Auto Immune Diet since last Fall and it has helped me. Also, I take vitamin D daily since I was low when I was first diagnosed 8 years ago.
Hi Nikki, I understand exactly what you are dealing with. I was diagnosed with PPMS about two years ago and my legs give me problems everyday and every night. I am doing the Ocrevus infusion and next month will be my 5th infusion. It gets hard but keep moving. Encourage yourself to get up and go. 🙏🏼👍🏼
i hear you! i was never diagnosed with rrms i was misidiagnosed for years so right into 2nd,i guess that kept me from mourning going into 2nd.get some days are the cane,somedays the rollator,some days the wheelchair.i have learned to absolutely listen to my body,if it says sit down,sit down.i do mourn the days I could do what I wanted ,but I have moved on,still days with tears.I also say "how many ways can the good Lord tell me to SIT DOWN?"keep moving the best you can....you are so not alone
I was officially diagnosed 8 years ago also. The doctor suggested PPMS or SPMS even then cause things were so severe. I could still walk with a walker until December when I fell and broke my hip. Had surgery and a titanium rod installed. I remember laying on the floor waiting for the ambulance when I broke my hip thinking my life was over. But, now I have a motorized wheelchair and can probably do more then I have been able to do for 3-4 years because I was so fatigued from trying to walk. I even traded in my car for a van with a ramp and hand controls that allow me to drive it. It's actually pretty awesome.
Don't be afraid to cry. Let the tears be a source of strength. Every one is a renewal. Then rise up and fight on with a strength you did not know you have. And, do not be afraid to redefine and re-evalute what fighting is. For years, I was so afraid of the wheelchair and what it symbolizes. Getting over that fear and stigma is strong not weak. Wish it didn't take a broken hip to figure that out!🙃
I agree with everyone here too. Watch the vitamin D like said before. When it's low it throws ones immune system out of wack. When mine gets under 40 it's an automatic MS flair for me.
In my 8 years since Dx, I’ve been on Tysabri, OCRevus, a few diff injectable meds, and now on Tecfidera since Dec 2018, which has been the best treatment for me.
Hi Nikki, I think the hardest thing for me in transitioning to SPMS was accepting my own limitations. Hell that is the hardest thing I have ever had to do in my life. That applied when I received the initial DX, and even more so when i was told I had skipped into the more progressive stage of this disease. It's such a tough pill to swallow. For me there was a lot of anger because I went so many years with misdiagnoses and patronizing doctors, some of whom basically patted me on the head and like I was imagining things because of the fleeting symptoms that MS often shows. I look back today and know I have had this disease since my late 20's and was not DX'd until my mid 50's and think about how different my life might be today if there had been one doctor back then that might have taken me more seriously, looked a little deeper, done a scan .. I could have been receiving treatment all those years and may not be in this position today. I try very hard to not dwell on these things but there are days it is very difficult not to.. especially when i am having trouble walking or even getting in or out of the shower or bed.. Take things one day at a time. Follow your doctors instructions. Things are what they are. Acceptance is key to mental stability and with that all things are possible.. we can do this.. We can
Thank you for sharing your experience and I’m sorry to hear that the doctors back then weren’t helpful for you at all. I had one Neuro in the past who didn’t believe what I was saying either and I had to change doctors. I’m glad I did!
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Novel Agent First to Slow Disability in Nonrelapsing Secondary MS
Defining primary progressive MS.
Secondary Progressive
